The Person with Dementia: The Personal Impact of Diagnosis Disclosure.

Gary Mitchell, Patricia McCollum, Catherine Monaghan

Research output: Contribution to conferenceAbstract

Abstract

Aim of Review: Dementia does not consistently remain patient-centered, with regards to diagnosis disclosure; a plethora of literature supports the notion physicians do not always clearly and directly disclose a diagnosis of dementia to the person with dementia. Furthermore this stance is often supported by relatives and informal carers. The purpose of this systematic review was two-fold; Theme one: to explore the attitudes of diagnosis disclosure from the person implicated. Theme two: to explore the person’s experience of being diagnosed with dementia.
Search and Review Methodology: There were very sparse findings on attitudes to disclosure from the person with dementia, however a wide number of primary research existed which examined the person’s experience of a diagnosis of dementia. 5 studies were found in relation to theme one and 12 studies (from the past five years) were found in theme two.
Findings: The perceived negative impact of disclosure, i.e. depression/suicidal tendencies, was not as common as background literature suggested. Many positive outcomes existed as a result of disclosure, i.e. future planning and the ‘relief’ that a recognized disease was the result of symptoms as opposed to ‘old age’.
Conclusion and Implications: The person with dementia has a right to disclosure in all instances, even if to decline a formal diagnosis. Through omission of a clear diagnosis, the person is disempowered. An interesting parallel is drawn with cancer-care which previously the same issue of non-disclosure existed. Yet this is no longer the case as cancer-care has undergone evolution, whereas dementia has not. A clear diagnostic framework is absent. Diagnosis should take place over multiple sessions to facilitate not only coping-strategies, but also for practical reasons, i.e. to allow adequate recall.

Conference

Conference22nd Alzheimer Europe Conference
CountryAustria
CityVienna
Period04/10/201206/10/2012
Internet address

Keywords

  • Dementia
  • Diagnosis Disclosure
  • Ethics
  • Human Rights
  • Dignity

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