Stable Self-Concepts and Flexible Coping Strategies of People with Dementia Attending Dementia Self- Help Groups in Germany: Results from the Qualitative Longitudinal SEIN Study

In this chapter, results from the qualitative longitudinal Selbstbestimmung und Intervention (SEIN) study conducted at the DZNE site in Witten are presented and discussed against the background of a previously conducted systematic review of the subjective needs, demands, and coping strategies of community-dwelling people with dementia. The objective of the study was to examine how participants of dementia self-help groups in the early and middle stages of the condition cope with their illness. A phenomenological approach with a life-course perspective served as the framework for the study. The findings suggest that a person’s self-concept is not changed by dementia but instead adapts over the trajectory of the illness. Struggling between external control (defence against stigmatization) and external protection (being taken seriously), and aiming for “Inner Security” were central concerns for the participants. Biographical background and social network are determining factors in the development and use of coping strategies. Stable Self-Concepts and Flexible Coping Strategies of People with Dementia Attending Dementia SelfHelp Groups in Germany: Results from the Qualitative Longitudinal SEIN Study