Emotional impact of dementia diagnosis: exploring persons with dementia and caregivers' perspectives

Abstract

This paper examined the emotional impact of diagnosis disclosure on recently diagnosed people with dementia. Thirty patient/caregiver dyads attending a Geriatric Day Hospital Program in Ottawa, Canada participated in this qualitative exploratory study. Data sources included: (a) audio-tapes of diagnosis disclosure meeting, (b) in-depth interviews with patients and caregivers within one week of disclosure, and (c) focus group interviews with caregivers within one month. Patients exhibited a range of emotional responses which can be divided into three broad categories: (a) responses suggesting a lack of insight and/or an active denial of the diagnosis, (b) grief reactions/emotional crisis related to the experience of actual or anticipated losses associated with dementia, and (c) positive coping responses to maximize the disease outcome. Participants went through stages of emotional response to their diagnosis: not noticing symptoms, noticing & covering up, or noticing & revealing; diagnostic process & disclosure; confirming or shock; denial, crisis, or maximizing; disorganization or adaptation. There is a need to develop a better understanding of the experience of people with dementia at the critical point of diagnosis disclosure in order to design supportive interventions to maximize adaptive coping responses.