"Who am I?" : personal accounts of the dementia assessment process and the impact of the dementia label

Abstract

There are competing models through which a dementia diagnosis can be understood, but what dominates the assessment process for dementia diagnosis is the medical model, which neglects the social, cultural, and political aspects of the diagnosis. In a Western society where value is ascribed to qualities associated with youth, such as good physical health, the rhetoric around older adults and dementia has long been dominated by stories of dependence and burden. Assuming them to be passive and unreliable, little research into the opinions of those diagnosed with dementia has been undertaken, but studies eliciting first-hand accounts suggest that the practice of diagnosis is inconsistent and often fails to meet the needs of the people receiving the diagnosis. Aiming to add depth to this research, four people aged over 65 with a dementia diagnosis were interviewed to evaluate the impact of socio-cultural discourse on their experience of being assessed for and living with a dementia diagnosis. Narrative analysis was then used, attending to the performative, descriptive, and contextual elements of the accounts. The study revealed the narrative abilities of people diagnosed with dementia and showed that hegemonic discourse on dementia alongside personal philosophies affect how the label is received and understood, and whether it is accepted or rejected. Participants also demonstrated value in interdependence, and a variety of post-diagnostic needs, reflecting the heterogeneity of those who receive the diagnosis. The implications of this study are then discussed, considering the impact that utilising the social model of disability could have on the treatment of people diagnosed with dementia.