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.

“To be, or not to be”: experiencing deterioration among people with young-onset dementia living alone

“…After the initial shock of the diagnosis (Aminzadeh, Byszewski, Molnar, & Eisner, 2007), which some reported, they seem to have adapted rather well to the situation. In the early phases of the study, most of the informants find that their strategies for handling the life situation are sufficient for living a good life.…”

From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences

“…A range of reactions is reported, from positive responses through to depression, grief, and active denial. [21][22][23] Studies of individuals undergoing assessment (and of their carers) have revealed equivocal views about the adequacy of information supplied, 24 and concerns about clinicians' ability to identify information needs and respond effectively; 25 observations that have similarly arisen in the Netherlands. 26,27 A literature review undertaken as part of the current study, which focused on the process of disclosure of dementia diagnosis, revealed wide variability in reported practice, with theoretical 'guidelines' that did not reflect practice.…”

A pilot randomised controlled trial to compare changes in quality of life for participants with early diagnosis dementia who attend a ‘Living Well with Dementia’ group compared to waiting-list control

“…Given the combination of powerful emotional responses to dementia (Aminzadeh et al, 2007;Connell et al, 2004) and the desire of most people to know about their illness (Ouimet et al, 2004;Elson, 2006;Jha, Tabet and Orrell;2001), it is perhaps unsurprising that psychotherapeutic approaches with people affected by dementia have been consistently reported over the last twenty years. Reports of group therapy interventions, including support groups and a range of psychotherapy interventions are at least as common as descriptions of individual interventions (Cheston, 1998) or couple psychotherapy (Auclair, 2009).…”