Preparedness of representatives for people with dementia in a self-directed program

Abstract

Representatives enact their role as decision-making partners across the intersection of participant direction (PD) and dementia care. Self-rated preparedness for key dimensions of the role endorsed by a panel of experts in PD and dementia was assessed by telephone survey of 30 representatives of persons with dementia in a PD program. The sample (daughters 60%; Black 50%; rural 70%) was diverse in length of time in the role and additional responsibilities. They represented participants with moderate to advanced dementia and ≥ two additional chronic illnesses. Overall preparedness scores were in the pretty well to very well prepared range, with variation across dimensions and between individuals. Preparedness varied according to what has to be done day-to-day in dynamic or unpredictable situations, gauging decisional capacity, anticipating changing needs, ensuring safety, supporting a dementia-capable care team and negotiation. Stress was related to having a safety net of capable back-up supports and dementia care literacy. Areas of strength, individual variation and particular challenges along the trajectory of representing can guide development of support counselor interventions to provide representatives with tailored training and resources as they enable the benefits of PD for persons with dementia.

The meaning of preparedness for informal caregivers of older adults: A concept analysis

“…Several more recent studies have addressed the topic of preparedness for caregiving (Gutierrez-Baena & Romero-Grimaldi, 2022;Mahoney et al, 2019). These studies have tended to define preparedness in alignment with the work of Archbold et al (1990Archbold et al ( , 1992 as how ready family caregivers perceive themselves to be for the multiple domains of the role, including physical care, providing emotional support and dealing with the stress of caregiving.…”

“…Several more recent studies have addressed the topic of preparedness for caregiving (Gutierrez‐Baena & Romero‐Grimaldi, 2022; Mahoney et al., 2019). These studies have tended to define preparedness in alignment with the work of Archbold et al.…”

Practical Support for Caregivers in Navigating Financial Issues Associated With Dementia

“…The professional literature is growing in looking at the need for informed preparation including sharing the dementia diagnosis early with both the patient and caregiver in order to increase early intervention efforts (Robinson, Tang, & Taylor, 2015), taking a holistic approach by considering multiple interventions designed for individualized needs (Wennberg, Dye, Streetman-Loy, & Pham, 2015), and offering caregivers evidence-based training programs (Mahoney, Simon-Rusinowitz, Loughlin, Ruben, & Mahoney, 2018; Silverstein & Sherman, 2010). Addressing financial needs is a component of this early intervention, and tools are being developed that will assist professionals in assessment and intervention (Burstein, DaDalt, Kramer, D’Ambrosio, & Coughlin, 2014; Swanson, Marson, McPherson, Gerstenecker, & Logovinsky, 2017).…”