Objectives: There are a number of conceptual models of dementia, capturing a range of biopsychosocial factors. Few integrate the lived experience of dementia. The aim of this study was to develop a conceptualisation grounded in the first-hand accounts of living with the condition and reflecting its complexity.
Method: The study was conducted within an explanatory, critical realist paradigm. An overarching narrative approach, informed by a previously completed systematic review and metasynthesis of research on the lived experience of dementia and the assumptions of complexity theory, was used to guide data collection and analysis. Data were contributed by 31 adults, including 12 people living with dementia and 19 family caregivers.
Results: The experience of living with dementia was conceptualised as a process of adaptation through participation, emerging from ongoing, dynamic and nonlinear interactions between the adaptive capacity of a person with dementia and the adaptive capacity within the environment. The proposed conceptual model describes contexts and mechanisms which shape this capacity. It identifies a range of potential outcomes in dementia. These outcomes reflect interactions and the degree of match between the adaptive capacity of a person and the adaptive capacity within the environment.
Conclusion: By recognising and exploring the potential for adaptation and enduring participation in dementia, findings of this research can support practitioners in facilitating positive outcomes for people affected by the condition.
Keywords: Dementia; complexity theory; critical realism; narrative methodology; personal experience.