‘I will not lie down and take this without a fight’: socialization as an ecological process in the narratives of people with young-onset dementia

Socialization through language in diverse contexts has been well studied. However, research on the ecological socialization of people with dementia, that is, how people with dementia are socialized in the existing and ever-changing environment and how they socialize their environment to meet their needs, has been rare. Drawing on the concepts of “narrated event”, “narrating event” and the various linguistic and discursive practices adopted under different participation frameworks for positioning at different levels (e.g., person deixis, reported speech, and evaluative indexicals), this study explores the bi-directional ecological process of socialization of older adults with young-onset dementia and the identities constructed in their narratives. Data were collected from the Dementia Diaries website, where 156 audio diaries of four older adults with young-onset dementia in the UK were transcribed and thematically coded for analysis. Findings indicate that (1) As people with young-onset dementia adapt to the existing and ever-changing environment, they adjust themselves to meet the challenges posed by the environment, reconsider the disease, and reconfigure their relations with the world; (2) people with young onset dementia make changes to the environment as needed, such as by reshaping the environments through home layout, navigating oneself with the help of particular objects and technology, and socializing institutional changes from an insider’s point of view. In these bi-directional processes of socialization, people with dementia construct various distinct and changing identities such as the victims of dementia, independent people who are not less able than those without dementia, vigorous problem-solvers, enthusiastic promoters of new technology, and advocates for institutional reforms, resisting the dominant discourse depicting people with dementia as having limited control over their life. Challenges concerning the progression of dementia and cultural differences, with the implications for recognizing and invoking the agency of people with dementia through multi-party collaboration, have been proposed in the end.