Abstract
Objectives: The aim of this study is to expose similarities and differences in the self-concept as well as in the illness perception of persons living alone with dementia based on their biographical background.
Methods: Twelve biographical narrative interviews with persons living alone with dementia were conducted and analyzed using the methodology of Grounded Theory (Glaser and Strauss).
Results: A model of the dementia-specific self-concept was developed which explains how persons living alone with dementia experience and cope with their disease situation. In the narratives the perception of the disease situation is primarily characterized by the persons’ relation to the self-concept rather than by dementia-specific symptoms. The extent to which a person experiences their disease as a critical life event depends on their premorbid internal and external loci of control. Depending on the use of various coping strategies the self-concept is either maintained or modified.
Discussion: The open and qualitative research approach with persons with dementia enables a first explanation towards illness perception that acknowledges the persons’ active coping abilities in the disease situation. Thereby, it largely surpasses deficit-oriented views. In order to fully exploit the potential of participatory and patient-oriented research further development of research designs specific to dementia is needed.