Managing memory loss: How early detection impacts individuals being diagnosed

Abstract

Background: The focus of research efforts concerning Alzheimer’s disease (AD) on the potentially pre-clinical stage, known as Mild Cognitive Impairment, has resulted in the ability to diagnose far earlier than has historically been possible. Objectives: This quest to diagnose AD as soon in the trajectory as possible has important consequences for those who are diagnosed. In practice, clinical assessment transforms the phenomenon of forgetfulness from an everyday occurrence into a medically relevant category of symptomology. This process of converting specific experiences into standardized medical facts also transfers the status of the person with memory loss into a potential patient with Alzheimer’s. Methods: 18 months of participant observation of the diagnostic process, qualitative interview data from 50 people undergoing cognitive evaluation, and focus groups with 35 diagnosed individuals. Conclusions: Respondents depict feelings of shame, fear, disbelief, alienation, and disgust during the testing process and upon hearing the results. For people seeking medical care for their memory loss, the transition from experience to symptom requires a subjective redefinition of everyday forgetfulness as a problem. The social death potentially accompanying a diagnosis of dementia engenders a situation where (pathologically) forgetful people become “Alzheimer’s patients.” This process involves the application of medical labels only as deemed circumstantially necessary; people accept to drastically varying degrees the label of AD only to the extent to which it aides them. Data suggest a distinction between fully assuming the “master status” of Alzheimer’s patient and exploiting such terminology when necessary. The spectrum of identity management employed by people diagnosed demonstrates an ability to purposefully manage one’s interactions. The management of an Alzheimer’s identity involved the utilization of resources such as support groups and research studies. The role that diagnosed individuals play in shaping clinical practice and research surrounding memory loss have clear and important ramifications. Early detection of Alzheimer’s disease, or Mild Cognitive Impairment, has granted researchers access to an entire population of people who are able to articulate their experiences and needs. It is crucial to listen to this new voice if we are to understand their impact on the services delivered and treatments offered.