| Statement of problem. There is a general paucity of research on narrative accounts of memory loss. Contemporary medical efforts are focused on early detection of Alzheimer's disease (AD) with the hopes of finding a cure. As a result, the potentially preclinical stage, called mild cognitive impairment (MCI), is routinely being diagnosed in specialty medicine. This has resulted in the ability to study the experiences of being cognitively evaluated, diagnosed, and everyday life with mild memory loss. Understanding the interaction between biomedical structures and individuals seeking medical attention for memory loss is particularly timely as the population ages.; Methods. 18 months of participant observation at two specialty clinics, including 46 diagnoses of AD or MCI, qualitative interviews, and focus groups were conducted. Data were analyzed using Grounded Theory. The complete sample included 77 respondents: focus groups with 32 diagnosed individuals, focus groups with 12 care partners of diagnosed individuals, and 33 in-depth interviews (12 clinicians, 12 Alzheimer's Association staff members, and 9 diagnosed individuals).; Findings. The theory that emerged is twofold. First, the social process of diagnosis involves negotiating everyday forgetfulness, converting forgetfulness into "symptoms," and, eventually, embarking on the path of Alzheimer's. The diagnostic process, then, serves an important social function and is a significant turning point in the incorporation of an Alzheimer's identity. Second, the social process of living with Alzheimer's involves interactional tensions necessitating the employment of various strategies to manage these issues. Strategies include focusing on the positive, accepting help, attaining serenity, employing humor, and being proactive. Interacting with the Alzheimer's Association is the second crucial turning point in encouraging individuals to see themselves as persons with a disease. Despite the important resources afforded as a result of being diagnosed, including time and services such as support groups and research studies, individuals with mild memory loss do not willingly adorn the label of "patient." Rather they actively resist being conflated with their condition and strive to be treated as deficient by utilizing various strategies. Understanding the bioethical implications of diagnoses is especially critical given the medical trend to diagnose preclinically and the aging of the population. |
