RESUMEN
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.
Asunto(s)
Cuidadores/psicología , Toma de Decisiones , Demencia/enfermería , Defensa del Paciente/psicología , Adulto , Anciano , Anciano de 80 o más Años , Servicios de Salud Comunitaria/normas , Femenino , Humanos , Masculino , Medicaid , Persona de Mediana Edad , Estados UnidosRESUMEN
Unaffiliated workers are directly hired personal assistance workers who are not employed through an agency and are not family members or close friends. This article examines the working conditions of unaffiliated workers in a consumer-directed setting in comparison to agency workers and to other consumer-directed workers. Unaffiliated workers earned higher wages than their peers but were less satisfied with these wages and benefits than other directly hired workers. Findings for consumer-directed programs are discussed in terms of the recruitment and retention of unaffiliated workers, implications for consumers and workers, and future research recommendations.