Paper
Saturday, 22 July 2006
This presentation is part of : Initiatives for Persons with Dementia
Emotional Impact of Dementia Diagnosis Disclosure on Recently Diagnosed Persons: Exploring Patients and Caregivers Perspectives
Faranak Aminzadeh, MScN, GNC, (C), Geriatric Outreach Team, Regional Geriatric Assessment Program of Ottawa, Ottawa, Ontario, ON, Canada, Anna Byszewski, MD, FRCP, (C), Geriatric Assessment Unit, The Ottawa Hospital Geriatric Day Hospital Program, Ottawa, ON, Canada, Frank Molnar, Institute on Health of the Elderly, University of Ottawa, Ottawa, ON, Canada, and Marg Eisner, Family Support and Education, Alzheimer Society of Ottawa, Ottawa, ON, Canada.
Learning Objective #1: to describe the possible range of emotional responses to the disclosure of dementia diagnosis
Learning Objective #2: to discuss the potential impact of social stigma, uncertainties associated with dementia diagnosis and hope on patients' reaction to their illness
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.

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