To tell or not to tell in the case of Alzheimer's Disease: The experience of disclosing dementia related information to others

Through its attack on memory and other cognitive functions, Alzheimer's disease influences
how people feel able to present themselves to others, and the way in which others respond.
Studies asking people newly diagnosed with Alzheimer's disease about their concerns, suggest
that many people fear others finding out and take steps to conceal. This has consequences of
inhibiting the continuation of valued activities and limiting the social support available to the
person with dementia. The present study explores how people with a diagnosis of Alzheimer's
disease think about and experience decision-making with regard to disclosures to others, and
how they experience others' responses.
Seven people with early-stage Alzheimer's disease were interviewed about their experiences
relating to disclosures of dementia-related information. Their accounts were analysed using
an Interpretative Phenomenological Approach. The analysis suggested 3 major themes, of
factors influencing disclosure, managing disclosure, and outcomes of disclosure decision.
Participants displayed different disclosure strategies, of concealment, disclosure and a nondisclosure
which was not motivated by concerns about others knowing. Those presenting with
disclosure and non-disclosure strategies tended to hold normalising accounts of their memory
difficulties, and to express more acceptance with their situation. Those that concealed
presented with more distress and concern at their situation, and were more likely to invoke
constructions of illness and decline. The findings are discussed in relation to the social context
where there is a stigma associated with dementia, and in relation to the anxiety that fears of
future decline may elicit. It is suggested that participants disclosures were managed in a way
to limit the impact of the cognitive difficulties, stigma and anxieties on their sense of self, and
their life and relationships.

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