This paper reports the findings of a descriptive, exploratory, qualitative study of patient and caregiver perspectives of the disclosure of a dementia diagnosis. Data were collected at 3 points in time: (1) the disclosure meeting, (2) patient and caregiver interviews, and (3) focus group interviews. Thirty patient-caregiver dyads participated in the disclosure meetings at the Geriatric Day Hospital at the Ottawa Hospital, Ottawa, Canada. Within a week of the disclosure of diagnosis, 27 (90%) patients and 29 (97%) caregivers were interviewed in their homes, and 12 caregivers participated in 3 focus group interviews within 1 month after the disclosure meeting. Most patients and caregivers said they preferred full disclosure of the diagnosis. Patients expressed satisfaction with the physician providing the diagnosis and with their caregivers being present at the disclosure meeting, however, wanted more information about their condition. Caregivers provided further insight regarding the patient response, and suggested the need to emphasize hope in the face of a difficult diagnosis, the use of progressive disclosure to allow the person (and caregivers) to prepare, and the provision of detail about the disease and its progression.

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.

In the context of care for patients with Alzheimer's disease and other dementias, the disclosure of the diagnosis is a major challenge for health professionals. If performed suboptimally, it has the potential of having a devastating impact on both the patient and the caregiver(s). As new treatments emerge for Alzheimer's disease, disclosure becomes more important, and health care professionals need information regarding the optimal manner in which to provide these diagnoses. To date, most research in dementia disclosure has focused on physician practice of disclosure and caregiver attitudes. This study was developed to look at actual patient/caregiver perceptions/satisfaction of the disclosure process and transference of critical information. The study further examined short–term (within 1 month post discharge) effects and outcomes of disclosure. This was a qualitative study conducted with 30 patients and caregiver dyads who had participated in a meeting where the diagnosis was disclosed. Data was collected (audio–taped and transcribed) at three points in time: 1) disclosure meeting, 2) patient and caregiver interviews held within one week of the meeting and 3) three focus groups with caregivers held within a month. All data was imported into Nudist software, coded and analyzed for themes. 20 women and ten men were recruited of the sample, 11 had Alzheimer disease, 7 had vascular dementia and 12 a mixed dementia. Patients' emotional responses included, shock, disbelief and anger. Patients spoke of the loss and stigma associated with the diagnosis. Caregivers provided insight about the patient response in the short term and provided advice on the disclosure process. Advice included the need to emphasize hope in the face of a difficult diagnosis, encouraging the use of progressive disclosure to allow the person (and caregivers) to prepare, and providing more detail about the condition. This poster will present actual perspectives from patients with dementia and caregivers, that can be readily translated into positive changes in terms of the manner in which disclosure of a diagnosis of dementia is approached in specialty care settings. Findings can also be applied to general care settings and eventually may be incorporated into evidence– based guidelines.