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.
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.
Original language | English |
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Publication status | Published - 05 Oct 2012 |
Event | 22nd Alzheimer Europe Conference: Changing perceptions, practice and policy - Vienna, Vienna, Austria Duration: 04 Oct 2012 → 06 Oct 2012 http://www.alzheimer-europe.org/Conferences/Previous-conferences/2012-Vienna/Detailed-Programme-abstracts-and-presentations/P1.-Diagnosis |
Conference
Conference | 22nd Alzheimer Europe Conference |
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Country/Territory | Austria |
City | Vienna |
Period | 04/10/2012 → 06/10/2012 |
Internet address |
Keywords
- Dementia
- Diagnosis Disclosure
- Ethics
- Human Rights
- Dignity