An uncertain journey : the experience of diagnosis for Alzheimer's disease

Abstract

Early recognition, diagnosis and treatment of symptoms of Alzheimer's disease (AD) affords the most promising medical, psychosocial and economic outcomes for all people affected by it. The obstacles to this ideal are not well understood. Concerns have been raised about the quality of health professionals' responses to AD. This study sought to address gaps in psychosocial understandings of AD by adopting case-focused, qualitative methods to research the views of eight people diagnosed with AD, and those of their family supporters. Specifically, attention was given to factors that mediate the subjective experience of diagnosis at the psychological level, the level of health, and within the particular social, cultural and political context of Auckland, New Zealand. An integration of within-case and across-case analyses of the interview data ensured that the unique features of each case could be honoured while a synthesis of the major themes across cases, afforded an appreciation of the common phenomenon of diagnosis for AD. A psychosocial process was identified in participants' cognitive responses to changing ability, although they did not experience the phases of recognising, rationalising, realising and responding in the same temporal pattern. Uncertainty and fear typified the pre-diagnostic period for participants; feelings perpetuated by family, friends and primary care physicians who discounted their concerns. A missed diagnosis was associated with negative psychosocial outcomes. Specialists' practices contributed to participants' perceptions of diagnosis as a source of stress or alternatively, as a source of support. Medication for AD symptoms was a key factor, moderating both immediate emotional responses and adjustment to the diagnosis. The theme, 'Living in the present - Facing an uncertain future', typified the process of coming to terms with the diagnosis. Factors impacting participants' experiences were: the stigma and visual image of AD, family and friends' reactions, role changes, and their perceptions of social support. A common analytic thread was the concept of uncertainty, the data revealing that it was in the presence of greater uncertainty that participants were likely to be physically, socially and psychologically more vulnerable to the impact of AD. Recommendations focus on ways to ameliorate the phenomenological uncertainty inherent in the experience of discovering dementia, receiving a diagnosis, and living with AD.