Dementia diagnosis disclosure: a study of patient and caregiver perspectives

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.