Fragile identities, patched-up worlds: Dementia and meaning-making in social interaction

This thesis focuses on the identity work and the meaning- or sense-making that continue in the face of evolving dementia diseases, in social interaction, and the challenges for care this involves. The study adopts an actor-oriented approach and addresses the question of how persons with age-related progressive dementia diseases in everyday communication make sense of their situations, their surroundings, and their lives – all within the context of daily life in residential care. Of particular interest is how these persons handle issues of joint action in a shared world and how they establish and maintain an identity in the inte-raction. This is in spite of severe memory problems, disorientation in time and space, dif-fering understandings of the current situation, and difficulties in telling “accurate” and temporally ordered stories about their lives. The thesis also addresses the question of how caregivers may handle the complex interplay between residents in daily care, in maintain-ing and respecting these persons’ dignity.The study follows a growing tradition of studying interaction in dementia as mean-ing-based and situated in a context rather than merely as behavior caused by cognitive impairment. Methodologically, this is an ethnographic study based on observations made within a period of six months. The data consist of around 150 hours of video recordings and complementary field notes. This extensive material has made it possible to study the social interaction both in detail and situated in a larger context.The findings point to remaining competences and strategies that persons with demen-tia use actively and creatively in the ongoing interaction – and, given the premises, often in a rational way. This is discussed in terms of resources for dementia care, in relation to the great challenge of patching up and putting together a comprehensive socially shared world as well as maintaining continuity with the persons’ previous life histories in a way that preserves a positive self-identity.


1 Introduction
1.1 Background: a disease entering the scene
1.2 A discourse of brokenness and disintegration
1.3 Understanding dementia – a tension between perspectives
1.4 Setting the framework: meaning-making in social interaction
1.5 Research focus and aim
2 Patched-up worlds
2.1 A fragile intersubjective world
2.2 Islands and breakdowns of shared meaning
2.3 Patching it up
3 Fragile identities
3.1 Narrativity, identity, and the broken narratives
4 An ethnographic social interactionist approach
4.1 The setting and the participants
4.2 Data collection
4.3 The data
4.4 Generating an analytical focus
4.5 Representing and translating recorded data
4.6 Approaching the data
4.7 Ethical considerations
5 Summary of the empirical studies
6 Making sense? General discussion
6.1 Patching things up: sense-, self-, and world-making
6.2 Meaning-making and narrativity
7 Challenges for dementia care
7.1 Putting together the patchwork quilt
7.2 Patching up the broken narratives
7.3 Further research

Author: Orulv, Linda

Source: Linkoping University

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