Social representations of barriers to care early in the careers of caregivers of persons with Alzheimer's disease

The first signs of cognitive impairment in the elderly generally elicit much concern among family members. Reactions run from denial to the active search for information. Some families manage to set up relatively well- organized networks of informal support to help both caregivers and elderly relatives. However, little is known about the processes underlying the different pathways that families follow at the onset of Alzheimer- type dementia in elderly relatives. To gain a better understanding of barriers to care early in the caregiving career, from the first signs of illness to diagnosis, the authors conducted interviews with 52 caregivers recruited at two cognition clinics. Barriers to help resources were analyzed from the viewpoint of social representations. This approach allowed the consideration of a broad range of individual and group phenomena capable of fashioning caregivers' representations of this period. The results confirmed the importance of the symbolic dimension of experience in steering social practice.