Emotional Impact of Dementia Diagnosis Disclosure on Recently Diagnosed Persons: Exploring Patients and Caregivers Perspectives

2.50
Hdl Handle:
http://hdl.handle.net/10755/150590
Type:
Presentation
Title:
Emotional Impact of Dementia Diagnosis Disclosure on Recently Diagnosed Persons: Exploring Patients and Caregivers Perspectives
Abstract:
Emotional Impact of Dementia Diagnosis Disclosure on Recently Diagnosed Persons: Exploring Patients and Caregivers Perspectives
Conference Sponsor:Sigma Theta Tau International
Conference Year:2006
Author:Aminzadeh, Faranak, MScN, GNC, (C)
P.I. Institution Name:Regional Geriatric Assessment Program of Ottawa
Title:Research Associate
Co-Authors:Anna Byszewski, MD, FRCP, (C); Frank Molnar, ; Marg Eisner,
The perspectives and experiences of people with dementia (PWD) in the early post-diagnostic phase have been largely ignored in dementia research, particularly in relation to the issue of diagnosis disclosure. The main objective of this paper is to examine the emotional impact of the diagnosis disclosure on recently diagnosed PWD from the perspective of patients and their caregivers. Thirty patient/caregiver dyads attending a Geriatric Day Hospital Program in Ottawa, Canada participated in this qualitative exploratory study. The triangulation of data sources was used to ensure reliability: a) audio-taping of disclosure meeting, b) in-depth interviews with patients and caregivers within one week of disclosures, and c) focus group interviews with a sub-group of caregivers within one month of disclosure. Patients expressed a range of emotional responses which can be divided into two broad categories: a) those characterized by a lack of insight and/or active denial of their diagnosis (e.g., avoiding naming diagnosis, not seeking out any information, minimizing impairment, defensiveness, etc.), and b) those associated with an awareness of their diagnosis and its implications (e.g., grief reactions of sorrow/sadness, fear/anxiety, self-blame/anger, passive resignation/nihilism, and active surviving/maximizing). Participants went through stages of emotional response to their diagnosis: noticing symptoms ; covering up OR revealing; diagnostic process and disclosure; confirming OR shock; denial, crisis, OR maximizing; disorganization OR adaptation. Among other emerging themes were the impact of fear of social stigma on the sense of self identity, uncertainties associated with the diagnosis and prognosis of dementia, and the importance of hope in the face of these uncertainties. There is an urgent need to continue to develop a better understanding of the experience of PWD after the disclosure in order to design supportive intervention strategies to assist PWD to maximize adaptive coping responses to their diagnosis.
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Sigma Theta Tau International

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleEmotional Impact of Dementia Diagnosis Disclosure on Recently Diagnosed Persons: Exploring Patients and Caregivers Perspectivesen_GB
dc.identifier.urihttp://hdl.handle.net/10755/150590-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Emotional Impact of Dementia Diagnosis Disclosure on Recently Diagnosed Persons: Exploring Patients and Caregivers Perspectives</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Sigma Theta Tau International</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2006</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Aminzadeh, Faranak, MScN, GNC, (C)</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">Regional Geriatric Assessment Program of Ottawa</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Research Associate</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">faminzad@magma.ca</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">Anna Byszewski, MD, FRCP, (C); Frank Molnar, ; Marg Eisner,</td></tr><tr><td colspan="2" class="item-abstract">The perspectives and experiences of people with dementia (PWD) in the early post-diagnostic phase have been largely ignored in dementia research, particularly in relation to the issue of diagnosis disclosure. The main objective of this paper is to examine the emotional impact of the diagnosis disclosure on recently diagnosed PWD from the perspective of patients and their caregivers. Thirty patient/caregiver dyads attending a Geriatric Day Hospital Program in Ottawa, Canada participated in this qualitative exploratory study. The triangulation of data sources was used to ensure reliability: a) audio-taping of disclosure meeting, b) in-depth interviews with patients and caregivers within one week of disclosures, and c) focus group interviews with a sub-group of caregivers within one month of disclosure. Patients expressed a range of emotional responses which can be divided into two broad categories: a) those characterized by a lack of insight and/or active denial of their diagnosis (e.g., avoiding naming diagnosis, not seeking out any information, minimizing impairment, defensiveness, etc.), and b) those associated with an awareness of their diagnosis and its implications (e.g., grief reactions of sorrow/sadness, fear/anxiety, self-blame/anger, passive resignation/nihilism, and active surviving/maximizing). Participants went through stages of emotional response to their diagnosis: noticing symptoms ; covering up OR revealing; diagnostic process and disclosure; confirming OR shock; denial, crisis, OR maximizing; disorganization OR adaptation. Among other emerging themes were the impact of fear of social stigma on the sense of self identity, uncertainties associated with the diagnosis and prognosis of dementia, and the importance of hope in the face of these uncertainties. There is an urgent need to continue to develop a better understanding of the experience of PWD after the disclosure in order to design supportive intervention strategies to assist PWD to maximize adaptive coping responses to their diagnosis.</td></tr></table>en_GB
dc.date.available2011-10-26T10:37:23Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T10:37:23Z-
dc.description.sponsorshipSigma Theta Tau Internationalen_GB
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