This study examines the early experience of Alzheimer's disease and builds on the small number of studies that utilise grounded theory with people with dementia and their families. In particular, the study explores the complex area of early awareness and recognition of undiagnosed dementia, how people and their families come to terms with a diagnosis of Alzheimer's disease and how they cope and adapt over time to the condition and life experiences
It is in this context that the thesis reports on the development of a longitudinal
research study that examines early awareness and adjustment to a diagnosis of
Alzheimer's disease using constructivist approaches to understanding subjective
experience (Guba and Lincoln, 1989) and utilising a constructivist grounded theory methodology (Charmaz, 2000), augmented by the supportive struts of a practitioner-research model and the use of life story narrative as part of the data collection. The aim of the research design sought not only to understand the experience of people with dementia, but also to enable them to theorise about these experiences by providing the framework for 'theory from data' (Glaser and Strauss, 1967) to be 'co-constructed' by people with Alzheimer's disease, supported by the author as a practitioner -researcher.
Key to this study has been the forging of genuine relationships and partnerships with the research participants and building a co-constructed grounded theory embedded with in the person's individual narrative and biography in order to develop an individual theory of early awareness and adjustment termed 'My Theory'. To facilitate partnership working a co-constructed grounded theory approach adopts less complex and jargonistic terms (Charmaz, 2000) and uses diagrams and conceptual maps to represent the developing theory.
The co-constructed grounded theory was developed with 4 people with an early
diagnosis of Alzheimer's disease. The co-constructed grounded theory took the form of the compilation of 4 separate 'My Theories' that were co-constructed with each participant, namely: Grace, Mo, Linda and Jo. The individual 'My Theories' were developed by the production of the participant's life story, which acted as a platform for the development of the 'My Theory'. The 4 participants co-constructed their experience of living with the onset of Alzheimer's disease as a process of 'Making Mistakes' and that their life stories had a powerful influence in determining their coping behaviours. Moreover, a sequence of balancing acts i.e. losing balance, finding balance and keeping balance both conceptualised and diagrammed their early adjustment experiences. A meta synthesis of the 4 'My Theories' led to the development of a 'Bridging' theory and metaphor as a conceptual description of the ongoing process of adjustment and adaptation to a diagnosis of Alzheimer's disease. The 'Bridging' theory provides a description that addressed the complex and biographically based responses to the onset, diagnosis and adjustment to Alzheimer's disease, in particular, the decision-making processes required at the time of transition between the stages of losing balance, finding balance and keeping balance.
It is suggested that the concept of 'Bridging' has the potential to inform research, practice and policy in dementia care.