What factors influence mental health professionals when deciding whether or not to share a diagnosis of dementia with the person?

Abstract

This study investigated what influences mental health professionals when deciding whether or not to tell someone with dementia their diagnosis. A qualitative methodology was employed and the data analysed using grounded theory. Currently people with dementia tend not to be told their diagnosis, despite evidence that sharing diagnostic information can improve psychological well-being and adjustment. Why professionals are reluctant to share diagnostic information with people with dementia is unclear, although the literature raises a number of possibilities. Seven professionals were interviewed (two clinical psychologists and five community psychiatric nurses). The main influence on their disclosure practice was uncertainty about whether the person with dementia would want to know the diagnosis, fuelled by a fear that to tell them if they did not want to know would cause harm. Professionals also expressed a strong sense of both hopelessness and helplessness when confronted with dementia. This was then projected onto the person with dementia, which in turn led to the professionals adopting an overly protective stance towards them. If professionals are to resolve their sense of uncertainty about what the person with dementia wants, in terms of diagnostic information, services need to develop ways in which the views of people with dementia can be heard and start to influence service provision and policy.