Experiencias luego del diagnóstico de demencia : aportes desde la perspectiva de los pacientes

Abstract

Introduction: Communicating the diagnosis of dementia is a medical challenge. Despite the the patients' right to be informed of their diagnosis, diagnostic disclosure is globally underperformed. In Chile, previous research has addressed the implications of diagnosis from the perspectives of families and family caregivers, but the perspectives and implications from the patients' perspectives remain unknown. Objective: To describe the experiences of patients following the diagnosis of dementia. Material and methods: Qualitative study. Interviews were performed to 11 individuals who had received the diagnosis of early-stage dementia of the Alzheimer's type, 5 women and 6 men, average age 70 years old (64-82). Interviews transcripts were analyzed using content analysis with open coding, using software NVivo 11.0 Pro. Results: The following five generic categories were produced from the interpretation of interviews to describe the experience of patients after being informed of a diagnosis of dementia: the enabling role of families, being informed about dementia, self-stigma, ambivalence on sharing the diagnosis, and coping strategies. Conclusions: Findings report specific unmet needs of patients who have been communicated of the diagnosis of dementia of the Alzheimer's type. Suggestions are presented to inform local health care and social support teams that face the challenge of developing interventions to support people with dementia and their families.