TOWARDS AN UNDERSTANDING OF INFORMAL CARE NETWORKS OF PERSONS WITH DEMENTIA: PERCEPTIONS OF PRIMARY CAREGIVERS

摘要

Although an understanding of the patient work system has been increasing in the field of Ergonomics and Human Factors, the role of informal caregivers (unpaid, nonprofessional caregivers) within the patient work system remains largely unexplored (Holden, Schubert, & Mickelson, 2015; Holden, Valdez, Schubert, Thompson, & Hundt, 2017). Informal caregivers include the family members and friends of persons with dementia (PwD), or anyone else who is unpaid, and a non-professional caregiver for a PWD(Reinhard, Given, Petlick, & Bemis, 2008). Nevertheless, informal caregivers are often unsupported and lack guidance with caregiving activities(Alrashed, 2017; Bossen, Christensen, Grönvall, & Vestergaard, 2013). This study represents a first step to define the work of informal caregivers, identify variations in caregiver involvement across multiple caregivers, and explore the perceptions of the primary caregiver (PC) regarding the care network. Understanding the specific roles and work associated with providing care can help us to support and prepare future and current informal caregivers on how to overcome barriers in the work system and increase quality of care for the PwD.